Julie Beckett, who helped disabled children live at home, died at 73

Katie Beckett has become one of many children, like Ryan Whitewho contracted HIV through a blood transfusion, e Ambra Tatrowho was born with spina bifida – whose health problems in the 1980s made them celebrities of the human interest, the subject of nightly news coverage, comprehensive newspaper profiles, and ultimately state and federal legislation.

Katie and her mother used their sudden exposure to the media to push for changes in government policy that would shift the focus of long-term care away from institutions and towards a family-centered approach. This development has helped millions of children live significantly longer lives than they could in the past.

“When we have those who are directly interested and able to share our stories at the table, we are able to put a human face on these issues,” said Elena Hung, co-founder of the disability rights group Little Lobbyists in a telephone interview. “We will have all the data, all the political analysis, all the experts who will talk about these issues, but we will not really take them home until we can see who is directly affected and humanize those issues. I think Julie and Katie did it expertly. “

Ms. Beckett didn’t stop once her daughter returned home, just before Christmas 1981. She quit her job as a middle school social science teacher to care for Katie and work as a full-time activist. She has traveled the country, lecturing, lobbying and teaching parents of children with disabilities how to support change in their communities.

He took the test before Congress, wrote opinion articles, and co-founded the Family Voices group, a non-profit organization that supports families of children with disabilities. She was also a prominent figure behind the Family Opportunities Act, a 2005 law that further expanded Medicaid coverage for such families and created a number of programs to help those families engage with each other.

Even after Katie’s death in 2012, Ms. Beckett continued her activism. She helped lead the indictment in 2017 against Republican efforts to repeal the Affordable Care Act and turn Medicaid into a block grant program to states – two moves that could have meant drastic reductions in funding for families on exemptions. Katie Beckett.

“It is unacceptable to Katie’s memory and to people with disabilities across the country that the services I fought so hard for are now being threatened by Republican members of Congress,” he wrote in a 2017 article for the American Civil Liberties Union website.

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